Parental distrust keeping African-American children out of trials

African-American distrust of clinical research and the medical system persists strongly is hampering the participation of children in clinical trials that could help to eliminate racial and ethnic health disparities, a new US study concludes.

Published in the February issue of Archives of Pediatrics & Adolescent Medicine, the study by researchers from the Children’s Hospital of Pittsburgh at University of Pittsburgh Medical Center and the University of Pittsburgh Graduate School of Public Health examined racial differences in parental attitudes towards medicine and research, as well as their implications for the enrolment of children in clinical research.

The researchers surveyed 190 parents (140 African-American, 50 white) of patients seen at the Children’s Hospital’s Primary Care Center, finding that African-American parents were significantly more likely to be distrustful of medical research than white parents. Specifically, when questions assessing trust were combined and analysed, 67% of the African-American parents expressed distrust of medical research, compared with 50% of the white parents.

African-American parents were also more inclined to believe (40% versus 28%) that physicians prescribed drugs as means of experimenting on unknowing patients. They were also more likely to feel that medical research involved too much risk to the participant (46.8% versus 26%); that physicians would not make full disclosures about a child’s participation in a trial (24.6% versus 10%); and that research participants would be favoured and would receive better medical care (48.6% versus 28%).

Education factor

Distrust of medical research was also linked with education levels: there were high distrust scores among 74% of those surveyed who had an educational level below high school, compared with 44% among college graduates. But race remained associated with higher degrees of mistrust even after the researchers controlled for educational differences.

This study was conducted by Dr Kumaravel Rajakumar, a paediatrician in the Children’s Hospital of Pittsburgh’s Division of General Academic Pediatrics, and Dr Stephen Thomas, director of the Center for Minority Health in the Graduate School of Public Health at the University of Pittsburgh.

“The higher levels of distrust among African-American parents can mean that they are less likely to enroll their children in clinical trials, which can have profound implications for eliminating racial and ethnic health disparities, as it impacts the extent to which research findings can be applied to the general population including minorities,” Dr Rajakumar commented.The study also found that financial and other incentives would only be “moderately effective” in increasing participation among African-Americans, he noted.

Dr Thomas said it was important for the biomedical research community to recognise that distrust among African-Americans was “not irrational; on the contrary, it reflects the legitimate discontent of far too many black families who experience racial discrimination when seeking medical care along with the clear and convincing evidence of racial disparities in their health status compared with whites”.

Using culturally appropriate recruitment materials, as well as research assistants with similar racial and cultural backgrounds to the subject population, could help to provide accurate information and quell parental distrust towards clinical research, the researchers suggested.

Setting up community research advisory boards, which provided feedback at all stages of a research study, was another way to ensure that minority community members participated in, and disseminated information about, studies while protecting the interests of research subjects and potentially reducing distrust.